Suggestions on What to Say
Suggestions of What to say to people when they say to us:
If they say: You don’t look sick!
You say: ‘Thank you for the compliment. You don’t have any idea how hard it is for me to appear this way.’
If they say: You are lazy!
You say: ‘Do you have any idea how rude and ignorant you really are at this moment? When you are ready to discuss what is wrong with me, we will.’ And then you walk away.
If they say: You don’t want to get better!
You say: ‘You have no idea what you are talking about! No one would ever want to live the way I am living or survive with what I have to suffer. You will never understand because even I don’t understand. Every day it seems there is something new, but this is a real disease and I am not alone. It is time for you to try to understand.’
If they say: Why aren’t you working?
You say without yelling or crying: Why aren’t you listening? If I ignored what you said like you ignore what I say, you would get very angry with me and wouldn’t understand why I wouldn’t listen to you. So, when you are ready to listen to what I am saying then we can have a discussion. Until then, this discussion is over, because I will not continue to have a discussion with a brick wall that has stuffed ears.’ Then walk away and do not cry until they can’t see you anymore.
If they say: Why don’t you clean the house?
You say: The same reason I’m not working.
If they say: Why don’t you cook anymore?
You say: The same reason I’m not working.
If they say: Why are you crying?
You say: Are you ready to listen?
What do you say to a partner who doesn’t believe that you are sick?
Start reading the support group with me.
If that partner says no?
Do you respect me? Do you love me? Then it is time to start standing up for myself. I need you to do this for me. I need you to be in this with me because this is something I don’t want to do alone. If that partner still says no, then tell that partner there is no option, communication is the key with this disease and that partner is not being part of the communication in the relationship and they need to be.
There are reasons people don’t believe in Fibromyalgia. For one thing, it is invisible and people can really only see it if they look in your eyes. So, ask people to look you in your eyes. As for Doctor’s, they are not taught about Fibromyalgia in medical school. If they hear anything about RSD or Fibromyalgia, it is in the form of Chronic Pain and then is only a mention. Chronic pain is only covered in 4 hours unless they specialize in it in their Residency. Then, their education will depend on where their Residency took place. Another thing about people not wanting to hear about Fibromyalgia is that the combination of symptoms do sound out of this world, if you think about it.
With RSD, I always thought that people didn’t want to hear how you could get it, because it makes it too close to home to realize that they could get it too. How frightening! Right?
Considering that the medical community don’t know what Fibromyalgia is, how exactly you get it, how to truly treat it, that there is no cure, can you blame people for not wanting to sit and listen to the litany of what is going on when you don’t really understand what is going on yourself? However, we are going to change that because that isn’t fair to you or to me for that matter. Right? And I’ve always believed in fairness. After all, I’m a Libra!
So, let’s set up some conversational points for everyone to discuss so that we can try to make people understand exactly what we live with in terms they can feel themselves.
- The worst flu they have ever experienced without constant vomiting but often experiencing nausea, sometimes experiencing diarrhea but also experiencing constipation that has lasted longer than 3 months. The pain is constant and is the worst pain you have ever felt, worse than kidney stones or child birth. And it is all over your body, sometimes including your hair. Could they work with this? Right? But that isn’t all…
- Complete and total exhaustion to the point that you feel like your legs can’t hold you if you stand up because of your exhaustion. And yet, as soon as your head hits the pillow you have complete and total insomnia. If your body does allow you to take a 2-3 hour nap, you wake up more exhausted than when you laid down because you never get into the deep REM restorative sleep. Could they work with this? But that isn’t all…Right?
- Migraines to the point where light and sounds, even smells might make you start vomiting and racing to the throne at the same time! ... but that isn’t all…Right?
- Sensitivity to touch, light, sound, smell, taste, all of your senses are heightened! ... but that isn’t all, Right
- Then there is the horrible feeling like there are bugs crawling on you, of course they are invisible too, but that isn’t all, …
- Then there is the absolutely awful itching that almost nothing helps and you might wake up and find that you have scratched while sleeping until you are bleeding…and sometimes that itching is in your privates, but that isn’t all, …
- Depression so deep that some people go off the deep end and never see the sunshine again…but that isn’t all …
- Your immune system is compromised and so you are susceptible to catching anything that walks by you … so you have to be very careful … you have to change your diet to fix your intestines so you don’t end up with leaky gut … you don’t want to get candida which you are now susceptible to … you are likely to get Celiac Disease … and other auto-immune diseases…
- Speaking of Celiac Disease, you probably have an autoimmune disease by now. Once you get once autoimmune disease, chances are that you will get more.
- If a weather system comes through everything is worse…
- If the seasons change everything is worse… and there is more of course
This is why it is so important for the people near and dear to you need to understand what Fibromyalgia is. Once we stop talking about the first 6 symptoms of Fibromyalgia, we start talking about deeper issues that they truly need to understand. You won’t be creating new symptoms, you might be developing new issues.
These are just the facts. I’m not trying to scare you. Does Fibromyalgia get worse as it ages? The truth is, Fibromyalgia is not an auto-immune disease, but it is attracted by them. If you developed Fibromyalgia, chances are that eventually if not before, you will develop auto-immune diseases and once you do, more will develop. Those are what will progress and make it seem like the Fibromyalgia is progressing.
As you age, you are going to develop aches and pains, that is just part of the aging process. Those aches and pains are normal and not necessarily part of Fibromyalgia. Don’t blame everything on Fibromyalgia, don’t blame every headache on Fibromyalgia. For instance, a sinus headache is just a sinus headache and should be dealt with as such.
Don’t let Fibromyalgia freeze you and stop you from living. If you do that, you will have a higher chance of getting worse. No matter what, moving is the best thing you can do for yourself. Loving yourself, keeping a positive attitude, good nutrition, getting regular blood tests and doctor visits, and keeping a watch on yourself and listening to your body should allow you and your partner to lead a wonderful and satisfying life together. God Bless.
Written by Deb Lundquist
September 23, 2017